Large international survey to ask informal caregivers about their experiences

With up to 13.6 million or one in four people in the UK performing some element of informal care since the Coronavirus pandemic according to Carers UK, and statistics suggesting that as many as one in three in Europe are acting as informal caregivers, it’s more important than ever that we know how best to support these vital, unpaid and often largely unsupported care providers in our communities.

It is estimated that the support given to a loved one or friend who is older, disabled or seriously ill, would cost the country £132 billion a year, or as much as a ‘second NHS’, if provided through public or private healthcare.

Researchers at Bangor University’s School of Psychology are leading a work package within a larger collaborative European Union Horizon 2020 research and innovation programme project (ENTWINE). This project, involving leading health researchers in the Netherlands, Italy, Sweden, and Israel, is collecting multi-national data on positive and negative experiences of both caregivers and care recipients, and on the kind of personal and social factors that influences their experience.

The information drawn from this will feed into other work packages which will develop and measure the effectiveness of various different levels and types of innovative support for caregivers.

To participate, people can complete an online survey and can also provide more in-depth information through a weekly diary assessment if they choose. See https://www.entwine-icohort.eu/ for more information and to get involved.

Val Morrison, Professor of Health Psychology at Bangor University, who is leading the ENTWINE work package explains:

“While medical and health advances mean that life expectancy has extended for us all, this means also that many people are living with chronic illnesses or frailty, and have care needs which health and social care globally can not always meet. That gap in provision is generally filled by friends and family, often described as informal or unpaid caregivers.

What expectations do society place on family members to provide care and how are such expectations experienced by those who find themselves in a caring role? Are there variations in these expectations across Europe? Do caregivers differ in their willingness and ability to care and if so, in what way? Does this affect their experience, and that of the care recipient in a negative or positive way? Only through such multinational comparative surveys can we begin to get a sense of caregivers need and then better target means of support.”

Mikołaj Zarzycki, who was selected from Poland for the multinational research team, is conducting the research from Bangor University’s School of Psychology. He said:

“We probably all know someone who is an informal caregiver, even though they may not define themselves as a carer, they’re just providing the support that a loved family member needs due to ill-health or age. But caregiving is often difficult, and these people deserve to be able to access suitable support for their needs, especially in our changing times. In the same way, receiving care also has its challenges as well as benefits which is why we hope to learn more about the individual experience of caregiving and receiving and how that may change according to who you are, or where you live or any number of other factors.”

Mikolaj Zarzycki added:

“It’s a privilege to be part of this Europe-wide ENTWINE Network which has enabled me to come to Bangor University and work in an international team with renowned researchers and carry out a PhD in such a societally important issue as informal care.”

Publication date: 15 October 2020